Alzheimer’s carries stigma and little hope of cure

In a time of medical breakthroughs, where cures are created for many conditions that were once terminal, it’s easy to forget that some conditions are still incurable and almost impossible to prevent or slow down.

Longer life expectancy means that by 2041 there will be 1.4 million people in Ireland aged 65 and over, making up 22 per cent of the population.

Dementia and old age go hand in hand so the number diagnosed with dementia is expected to increase three-fold to more than 120,000 in the next 30 years. Currently, there are nearly 42,000 people living with dementia in Ireland.

Alzheimer’s disease, a common form of dementia, causes memory loss and there is very little medically that can be done. Certain drugs may slow down the progression of the condition, but they are not a cure.

Isolation and exclusion
The World Alzheimer Report 2012 looked at the stigma attached to dementia and Alzheimer's. Families and friends often don't know how to deal with it, which creates feelings of isolation and exclusion for people with dementia.

The report surveyed 2,500 people across 54 countries, including 150 people with dementia. Three-quarters of respondents said there were negative associations about people with dementia, while 40 per cent of people with dementia felt isolated or treated differently since their diagnosis.

Marc Wortmann, executive director of Alzheimer's Disease International, says the stigma problem is related to a lack of education.

“People need a better understanding of Alzheimer’s. They need to understand that it is a disease. It’s not their fault; it is just something that happens to the brain.”

Stephen* has been personally affected by Alzheimer’s and has seen the stigma first hand.

“My dad died when he was 48,” he says. “They found that he had a genetic mutation.” Stephen’s family’s particular situation is very rare and accounts for less than 1 per cent of cases.

However, as a gene that is inherited by either the mother or the father directly, Stephen has a 50 per cent chance of having the genetic mutation.

“If I inherit the gene, I will get Alzheimer’s, there’s no maybe about it. But if I don’t, I don’t and then I can’t pass it on to any children.”

Stigma
Stephen says, having gone through it in his own family, he's seen "both sides of the spectrum" with stigma.

“You’ve got one side who don’t want to talk about it – they’re almost in denial about it – and then the other side who will shout as loud as they can to be heard about it and raise awareness.

“I’ve lived through it, I wouldn’t have wanted to talk about it, I certainly wasn’t telling anyone about it,” he says.

“For some people it’s almost an embarrassment. There’s still a bit of ‘I hope the neighbours don’t find out’ but there have been improvements in recent years.”

Stephen believes that awareness and education is the biggest part of getting rid of the stigma attached to dementia and Alzheimer’s.

“There’s not a lot of information about it. The key is to get people to talk simply about it. A lot of people don’t even know that there isn’t a cure.”

Stephen is currently undergoing genetic testing to find out if he has the genetic mutation, as well as a research programme in the UK that can monitor his brain activity before he is affected, if he has the gene.

Research programme
"They're able to tell if anything is going on in my brain. They won't tell me any results though, it's purely for research purposes," he says.

“The reason I’m doing the research programme is so they can hopefully find a cure for Alzheimer’s in the future.”

Samantha Taylor, information manager at the Alzheimer's Society of Ireland, says dementia is almost like a "double stigma". There is an ageism stigma because it mostly affects older people and there's also the dementia stigma.

“People feel there are real negative connotations with it; there’s a reluctance to engage with people with dementia, and there’s avoidance.”

Taylor says because of the avoidance, people with dementia and Alzheimer’s can’t participate normally in society. “They don’t fit into any category,” she says.

“This leads to isolation very quickly and not just for the person but also their families.”

The Alzheimer’s Society of Ireland has a pre-budget submission for 2014, which Taylor says focuses on the importance of early intervention.

“There’s a real need for services for early onset and early intervention,” she says. “There isn’t a dementia-specific unit for people under 65.”

Early onset
Early onset is defined as diagnosis under the age of 65 and accounts for more than 8 per cent of all cases of dementia in Ireland and Taylor says while people under 65 can apply for a homecare package if they have been diagnosed with dementia, "it is more difficult for them".

“It’s important for people and families affected by dementia and Alzheimer’s to know there is a place that they can turn to.”

To talk to someone or get advice about dementia and Alzheimer’s, contact the Alzheimer’s Society of Ireland on tel: 01 800 341 341.

*Stephen’s name has been changed.